How do you stay connected to loved ones?

[Alan M]

Staying connected to my family and especially my spouse remains most difficult. I have one friend that I send emails and text messages to, but often don’t hear back from him as often.

Ever since I was diagnosed with PD, my wife and I stopped being intimate. Chronic illness like PD tends to compromise sexual functioning — especially causing ED (erectile dysfunction). This particular situation has lead to us sleeping in separate beds, and has resulted in emotional and poor practical issues.

I really miss having intimate sex. I find myself becoming very frustrated and angry at myself, too. I often feel distant from my spouse even though we hug one another occasionally. She seems to have specific issues and refuses to get too close physically.

I sincerely wish we could agree upon general strategies for optimizing sexual functioning including adopting varied sexual positions, timing sexual activity, timing medication administration, and reducing or eliminating the use of offending agents like specific anti-dopaminergic medications.

I need to see specific medicos to help us with these negative struggles. Who, how much and where are the biggest problems.

aafp.org

Chronic Illness and Sexual Functioning

Chronic illness and its treatments can have a negative impact on sexual functioning. The mechanism of interference may be neurologic, vascular, endocrinologic, musculoskeletal, or psychologic. Patients may mistakenly perceive a medical prohibition to the resumption of sexual activity, or they … Continue reading

[Ally]

Thanks for being so open, Alan. What you’ve shared is a very hard, emotionally challenging situation. I wish I had answers for you. Have you spoken to your friends, family and wife about your desire for more connection with all of them? How have they responded?

[Furcat]

My wife and I went through the same thing as you are now. A great distance happened between us. But after 9 years, we have found other ways to connect and have intimacy. My wife is really into learning about Parkinson’s now, and she has gotten me involved in Parkinson’s groups, physical and speech therapy-we participate in APDA Optimism Walks. She and I found new friends going through the same thing we are, and we help each other. Parkinson’s can be so overwhelming, so it’s important to surround yourself with people who can advocate for you and give you comfort in times of need.

[sofibrown]

In my case, as a caregiver, it is important to separate the time I spend with my grandmother and the time I spend for myself. Of course, we all understand that a person should have his or her own interests, because it is difficult to live without them. Recently, I became interested in https://betterme.world/articles/wall-pilates-beginner-workouts/ and began to devote more free time to it, thus improving my physical condition and now I have more activities in my life.

[Furcat]

I stay connected by reaching out and talking to them. Otherwise, they don’t know what you’re going through. I also think it’s good to sit down and watch a video about it with them. I like this video: https://parkinsonvoiceproject.org/education/what-is-parkinsons/

parkinsonvoiceproject.org

What is Parkinson’s? Video - Parkinson Voice Project

What is Parkinson’s? Presented by: Samantha Elandary, MA, CCC-SLP Founder & CEO, Parkinson Voice Project People with Parkinson’s have much more control over their movements than they might think. Understanding the role of dopamine and the concept of INTENT can … Continue reading